Shana D Stites1, Hannah Cao2, Kristin Harkins3, Jason D Flatt4. 1. Department of Psychiatry, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA. 2. School of Social Policy and Practice, University of Pennsylvania, Philadelphia, Pennsylvania, USA. 3. Department of Medicine, Division of Geriatric Medicine, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA. 4. Social and Behavioral Health Program, School of Public Health, University of Nevada, Las Vegas, Las Vegas, Nevada, USA.
Abstract
OBJECTIVES: Differences between men and women are common in published research on aging and Alzheimer's disease and Alzheimer's disease-related dementias (AD/ADRD). What do these differences mean? To answer this, rigorous measurement is needed. We investigated current methods for measuring sex/gender in aging and AD/ADRD cohort studies. METHODS: An online survey was sent to National Institute on Aging-funded Alzheimer's Disease Research Centers (n = 38) and investigator-initiated cohort studies (n = 38) to assess practices around enrollment of men and women and measurement of sex and gender. RESULTS: The response rate was 65.8% (n = 50). All enrolled men and all but two investigator-initiated studies enrolled women. Most cohorts (43/50) had no documented definitions for categories of "men" or "women." Over 85% of cohorts relied solely on self-report questions to capture sex/gender data (n = 43/50). Issues with administration were also identified (n = 7). DISCUSSION: Our findings identify gaps in current approaches used to measure sex and gender in aging and AD/ADRD research. We discuss opportunities to bridge these gaps and advance measurement of sex and gender in aging and AD/ADRD research. Changes are needed to ensure inclusion and representation of sociocultural diversity in research samples, and consistency in data collection in aging and AD/ADRD research.
OBJECTIVES: Differences between men and women are common in published research on aging and Alzheimer's disease and Alzheimer's disease-related dementias (AD/ADRD). What do these differences mean? To answer this, rigorous measurement is needed. We investigated current methods for measuring sex/gender in aging and AD/ADRD cohort studies. METHODS: An online survey was sent to National Institute on Aging-funded Alzheimer's Disease Research Centers (n = 38) and investigator-initiated cohort studies (n = 38) to assess practices around enrollment of men and women and measurement of sex and gender. RESULTS: The response rate was 65.8% (n = 50). All enrolled men and all but two investigator-initiated studies enrolled women. Most cohorts (43/50) had no documented definitions for categories of "men" or "women." Over 85% of cohorts relied solely on self-report questions to capture sex/gender data (n = 43/50). Issues with administration were also identified (n = 7). DISCUSSION: Our findings identify gaps in current approaches used to measure sex and gender in aging and AD/ADRD research. We discuss opportunities to bridge these gaps and advance measurement of sex and gender in aging and AD/ADRD research. Changes are needed to ensure inclusion and representation of sociocultural diversity in research samples, and consistency in data collection in aging and AD/ADRD research.
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Authors: Shana D Stites; Sharnita Midgett; Dawn Mechanic-Hamilton; Megan Zuelsdorff; Crystal M Glover; David X Marquez; Joyce E Balls-Berry; Marissa L Streitz; Ganesh Babulal; Jean-Francois Trani; J Neil Henderson; Lisa L Barnes; Jason Karlawish; Dave A Wolk Journal: Gerontologist Date: 2022-05-26
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Authors: Tina E Brinkley; Shana D Stites; Holly C Hunsberger; Carrie A Karvonen-Gutierrez; Mengting Li; C Elizabeth Shaaban; Roland J Thorpe; Stephen B Kritchevsky Journal: Innov Aging Date: 2022-08-21